The Invisible Front Lines

Nearly 12 million Americans provide unpaid dementia care for loved ones. Researchers at George Mason are building new models of support to help them cope, connect, and carry on. 

For 12 years, Lily Liu cared for her mother, who had Parkinson's disease, in her Washington, D.C., apartment. She handled every meal, every bath, and every sleepless night as her mother’s Parkinson’s-related dementia advanced.  

“I was doing it all by myself,” she says.  

Relief arrived through Mason Caregivers Aiming for Resilience, Empowerment, and Support (CARES), an evidence-based virtual support program developed by George Mason University researchers to help family caregivers manage stress and burnout. Over nine weeks, caregivers participated in guided breathing exercises, journaling, and group discussions designed to build resilience and connection. 

For Liu, the greatest benefit was the realization that other people understood what she was going through. 

Researcher Megumi Inoue, a professor in the Department of Social Work who served as a co-investigator on the project, says that was the goal.  

“They learn they’re not alone. There are people wearing the same shoes, so they can exchange information and experiences,” she says.  

That support translated into measurable results. Using a standardized caregiver burden score that measures exhaustion and emotional strain, researchers found a 15 percent reduction in stress levels among participants. 

“That’s a pretty big deal,” says Gilbert Gimm, associate professor of health administration and policy, who led the data analysis. “Even modest reductions mean relief.” 

Across the country, nearly 12 million people provide unpaid care for relatives or friends living with Alzheimer’s disease or related dementias. Roughly 80 percent of that care takes place at home, a reality that has created mounting pressure on family members as the population ages. Researchers estimate that by 2040, 110 million people worldwide will be living with dementia. 

College of Public Health researchers see this growing burden as both a caregiving crisis and a public health priority. George Mason is actively approaching improvements in health systems that advance science, develop talent, and strengthen communities. It’s all part of the university’s Grand Challenge Initiative and its Improving Human Health, Well-Being, and Preparedness solution.  

Across disciplines, faculty are developing interventions designed to support caregivers through technology, community-building, and new models of training and care. Their work includes virtual support groups, music-based interventions, artificial intelligence (AI) platforms, and virtual reality (VR) simulations designed to deepen empathy and improve caregiving experiences. 

The Invisible Backbone of Dementia Care 

“Caregiving is one of the most stressful roles imaginable,” says Catherine Tompkins, principal investigator of Mason CARES. 

The toll caregiving takes on families is profound. Participants in the Mason CARES study entered the program with stress levels well above the threshold associated with anxiety, depressive symptoms, and worsening physical health. In a separate analysis led by Inoue, nearly three-quarters of Alzheimer’s caregivers reported living with at least one chronic condition themselves. 

Gimm believes the strain reflects a broader policy problem in the United States, where “aging in place” has become the preferred model for dementia care without a corresponding investment in caregiver support. 

“The U.S. saves money by keeping more people at home,” he says, “but it’s on the backs of family caregivers. That’s not sustainable.” 

According to Tompkins, for aging in place to succeed long term, caregivers need far more support than they currently receive. Family caregivers urgently need access to training, resources, programs, and respite, she says. 

Turning Research into Relief 

The pandemic reshaped how researchers approached that support. Mason CARES launched during the pandemic and was delivered entirely over Zoom, ultimately reaching 97 caregivers across the country—an unusually large sample for dementia research. 

Historically, Tompkins explains, many caregivers struggled to attend in-person programming because they could not leave their loved ones alone. Virtual delivery unexpectedly removed that barrier. 

“We ended up with people from all over—Texas, Louisiana, Northern Virginia,” she says. 

Some of the most meaningful interventions are also among the simplest. Within Mason CARES, researchers incorporated elements of Music and Memory, a national program that uses personalized music playlists to help people with dementia reconnect with memories. 

Research has long shown that familiar music can prompt moments of recognition, speech, movement, and joy in people living with dementia. George Mason researchers wanted to understand how those moments also affect caregivers. 

“The idea is that if the person living with dementia is happy, it can reduce resistance, and caregiving becomes more positive,” Inoue says. 

Researchers found that caregivers used the technology in very different ways. Some never found time to use the MP3 players they received, while others discovered deeply meaningful moments of connection. One caregiver told researchers that listening to a song from her wedding helped briefly restore a sense of partnership with her husband after dementia had left him emotionally distant. 

In a follow-up study, Inoue and Tompkins are now examining those types of nuances to understand what made the program effective and where it fell short.  

For some Mason CARES participants, the relationships built through the program outlasted the research itself. Liu’s support group continued meeting even after the program ended. 

“Five of us kept it going,” says Liu, whose mother passed away two years ago. “We’ve seen each other through loss and grief. This program built a sense of community, and that meant a lot for our little group.” 

Technology Designed for Human Connection 

As caregiving demands increase nationwide, George Mason researchers are exploring how technology can create more accessible, culturally responsive, and personalized support. 

With a $3 million grant from the National Institute on Aging, health administration and policy researcher Y. Alicia Hong is refining Wellness Enhancement for Caregivers (WECARE), an AI-enhanced digital intervention for dementia caregivers. 

The seven-week platform combines multimedia education, quiz games, social networking, personalized feedback, and tailored caregiving resources. The goal is to create technology that feels responsive to caregivers’ daily realities. 

“WECARE is one of the first personalized digital interventions for dementia caregivers,” says Hong. "Though it is designed for Chinese American dementia caregivers, it can be adapted for other groups and serve the growing demand for digital support for dementia caregivers in an aging society.” 

Another George Mason researcher, School of Nursing Professor Kyeung Mi Oh, is using AI to help families reconnect through storytelling and memory. 

Oh is serving as co-principal investigator on a $2.9 million National Institute on Aging grant to refine the LifeBio Memory app, an AI-powered storytelling platform that helps older adults capture memories and share them with caregivers and family members. 

The project builds on reminiscence therapy, an approach that uses personal memories to strengthen mood, cognition, and social connection for people experiencing memory loss. 

“We want to see how storytelling technology can improve quality of life and relationships for both the older adult and the caregiver,” says Oh. “When people talk about their past, they often smile. It strengthens social support and emotional closeness.”  

Over the next three years, Oh’s team—including co-principal investigator Lisbeth Sanders, founder and CEO of LifeBio—is conducting usability testing followed by a randomized controlled trial with 84 caregiver–care recipient pairs. 

Earlier versions of the app used in nursing homes and assisted-living facilities showed greater engagement and fewer symptoms of depression among residents. The new phase of research brings the technology into homes and community settings while expanding it into English, Spanish, and Korean. 

Researchers hope the platform can eventually become a scalable and affordable support tool for families caring for loved ones at home. “We’re working to make LifeBio Memory accessible for people of different languages and cultural backgrounds, so older adults can tell their life stories in their own voices,” says Oh. 

Building Empathy Through Virtual Reality 

For George Mason researcher Li-Mei Chen, the potential of virtual reality (VR) became clear the moment she experienced a dementia simulation developed in Japan. At a conference on aging, Chen put on a VR headset and suddenly found herself inside the perspective of a person living with dementia. 

The simulation cast her as an older adult experiencing confusion and delusion, frozen in fear at the end of a hallway as the floor appeared to disappear beneath rising floodwaters. “There was no actual flooding,” Chen recalls, “but I could feel the panic.” 

Chen, who teaches in the Department of Social Work, immediately saw how the technology could transform dementia training for professional caregivers. 

Working with Japanese company Jolly Good, and with support from the Virginia Center on Aging, Chen launched a pilot program for certified nursing assistants at a Northern Virginia nursing home. The training combined immersive VR experiences with online lessons and group discussion. 

The VR scenarios, adapted for English-speaking audiences using AI-generated voiceovers, allowed participants to experience the confusion, fear, and sensory disorientation often associated with dementia. For many participants, it was their first dementia-specific training. 

Beyond improving patient care, the researchers hope the project can also support workers in a field marked by high turnover, low wages, and emotional exhaustion. 

Both Inoue and Chen bring a global perspective to their work, shaped by their years of studying aging and dementia care in Japan, where nearly one in three citizens is over 65.  

“In Japan, dementia is seen as a community issue, not just a family one,” says Chen. She points to dementia-friendly neighborhood cafés, school-based dementia education, and trained community volunteers as examples of a more collective approach to care. 

Chen emphasizes that VR is not as a replacement for human caregiving; it’s a tool for building empathy and strengthening relationships between caregivers and the people they support. 

“It’s about understanding the person and building a connection that’s beyond client and provider,” Chen says. 

Mary Cunningham, Katie Pearce, and Taylor Thomas contributed to this feature.